It’s an unfortunate reality: Relationships with friends and family often change after a child is diagnosed with brain cancer. People with whom you once had easy conversations can now be awkward and distant.

“The reality is that not everyone will act the way you want or expect them to, and support will come from places where you least expect it,” says Dr. Elyse Heidelberg, a pediatric psychologist at St. Jude, during the Pediatric Brain Tumor Foundation’s webinar Navigating Changing Relationships Following a Pediatric Brain Tumor Diagnosis.

These rapid and dramatic relationship changes can be disorienting and isolating, but the support of friends and family will be important for your family’s emotional and mental wellbeing.

During the webinar, Dr. Heidelberg and her colleague, St. Jude pediatric psychologist Dr. Victoria Willard, share evidence-based strategies to help you:

• Look for the positives in changing relationships with friends and family members
• Navigate disappointment in changing relationships
• Utilize practical self-care tools when navigating these relationships

Deciding How Much to Share With Others

It’s important for your family to first determine what and how much information you share with others.

Dr. Willard explains, “Whenever you think about which strategies and resources are going to be most aligned with you and your family, there are questions that need to be asked, very similar to what your values are.”

No one is required to be an open book. Dr. Willard recommends asking yourself the following questions to determine what and how much you’re willing to share:

• How do I like to communicate? Do I prefer to write or talk?
• What are some tangible things my family needs? Do I need rides for my other kids? A babysitter? Someone to clean my house or make some meals?
• What do I want people to know? Do I feel better when I share or do I prefer to keep things more private?
• How am I feeling? Should I share my current feelings with others? How is this influencing the way I’m communicating?

Practical Recommendations for Self-Care 

As you navigate changes in your relationships with friends and family, it’s also important to take care of yourself and understand how you’re navigating the changes and challenges you’re personally going through.

Drs. Heidelberg and Willard recommend an approach called Acceptance and Commitment Therapy (ACT), which focuses on the reduction of suffering and living a full, meaningful life.

“The primary aim of ACT is to accept what is out of our personal control and commit to taking action that enriches our lives,” explains Dr. Heidelberg. “Psychological skills can be learned to help manage painful thoughts and experiences.”

The goal of ACT is to be present, open and focused on what really matters – all of which seems simple and obvious, but in reality requires focused effort. In the webinar, Dr. Heidelberg provides tangible examples for how to accomplish each.

Dr. Willard also recommends the following self-care tips:

• Appoint a trusted friend or family member to be your spokesperson/point person – you don’t have to do it all yourself
• Carefully consider whether you’d like to use social media to communicate to a wider group – and if so, whether or not you’d like to receive comments (these can be left on or turned off)
• Prioritize relationships that leave you most fulfilled
• Maintain some social engagements – normalcy and support are healthy
• Make new connections with other parents of children with brain tumors – they understand better than anyone what you’re going through

If you’re interested in speaking with a parent or caregiver who understands what you’re going through, we’re here to help. Email us at [email protected] or fill out our Family Connection Form to speak with a member of our team about connecting with others who have experienced a child’s brain tumor diagnosis.

Thank you to Drs. Heidelberg and Willard for joining us for this webinar. To learn more about the above recommendations and guidance, view the on-demand webinar and visit Together By St. Jude for related resources Drs. Heidelberg and Willard recommend.

The Pediatric Brain Tumor Foundation’s webinar series helps ease the social isolation and emotional distress families face after a child’s brain cancer diagnosis. These virtual events feature carefully chosen experts and patient families who share information, resources, and personal experiences relevant to the pediatric brain tumor journey. They also offer opportunities for parents, caregivers, survivors, and family members to ask questions. Learn about upcoming webinars and view recordings of past webinars at curethekids.org/webinars.